Understanding the role of genetics in cancer is an essential part of cancer research and many researchers now include genetic testing in their research. As a result, researchers will identify a small number of people who have inherited a genetic variant that significantly increases their risk of developing cancer. Some people may already know this information, but some may not.
Researchers do not usually return genetic results to research participants, but there is an ethical duty to offer to do this when the genetic information is relevant to the participant’s health – that is, when the participant’s genetic information puts them at significantly higher risk of disease and there are proven ways to reduce the risk of developing the disease (e.g. medication or surgery) or detect the disease early (e.g., more screening or particular types of screening), or new options for treatment. Importantly, there may be others in the research participant’s family who carry the genetic information but are not aware and would want to know.
When a person provides their consent to take part in a research project that includes genetic testing, they might be asked if they want to be informed if researchers identify a genetic variant that significantly increases their risk of developing cancer.
Cancer Council Victoria has partnered with genetic counsellors at the Garvan Institute of Medical Research, through a program known as My Research Results https://myresearchresults.org.au/, to inform our study participants about genetic information relevant to their health. The genetic counsellors have expertise in providing information and support to research participants who are notified that important, clinically actionable genetic information may have been identified. There is no cost to speak with a genetic counsellor on the telephone. They also have access to interpreters.
While the likelihood of identifying genetic information that puts an ABC Study participant at significantly higher risk of disease is low, it is important to keep your contact details and the details of your next of kin up to date on the ABC Study website.
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